Introduction
Methods
Design
Study setting: low vision services in the Netherlands
Study population
Professionals
Patients
Sample size
Data-collection
Data-analysis
Results
Response and characteristics
n (%) | Mean (SD) | Median [range] | |
---|---|---|---|
Characteristics professionals (n = 16) | |||
Sex, female | 6 (40) | ||
Age (in years) | 47 (8.9) | 46 [30–64] | |
Profession | |||
Ophthalmologist | 7 (44) | ||
LVS professional | 9 (37) | ||
Low vision optometrist | 3 (33) | ||
Professional LVS organizations | 6 (67) | ||
Optometrist | 1 (17) | ||
Eligibility assessor/administrator | 2 (33) | ||
Clinical physicist | 1 (17) | ||
Advisory professional | 1 (17) | ||
Manager | 1 (17) | ||
Years of work experience | 15.5 (10.2) | 15 [0.5–35] | |
Characteristics patients (n = 14) | |||
Sex, female | 10 (70) | ||
Age (in years) | 74 (11.6) | 74.5 [55–96] | |
Visual impairment | |||
Mild VIb | 3 (21) | ||
Moderate VIb | 8 (57) | ||
Severe VIb | 1 (7) | ||
Monocular vision | 1 (7) | ||
Reduced vision and visual field defect | 1 (7) | ||
Eye diseasea | |||
Macular degeneration | 9 (64) | ||
Glaucoma | 3 (21) | ||
Diabetic retinopathy | 3 (21) | ||
Cataract | 1 (7) | ||
Years since diagnosis | 10 (13.1) | 5 [0.3–44] | |
Years since referral | 2 (1.8) | 0.75 [0.2–6] |
Barriers and facilitators
Level | Barriers/Facilitators | Professionals | Patients |
---|---|---|---|
Individual Level | Motivation | + , − | + |
Self-advocacy | + , − | + | |
Experienced impact of the VI | + , − | + | |
Participation needs | + , − | + | |
Attitude regarding asking for help and seeking healthcare | − | ||
Disease duration | + , − | ||
Lack of awareness and knowledge of LVS | − | ||
Acceptance of the VI | + , − | − | |
Other individual factors (Cultural background, unawareness of the eye disease, overall health condition and other private circumstances) | − | ||
Interpersonal Level | Information provision LVS | + , − | + , − |
Communication skills/strategies healthcare professionals | + | + , − | |
Social support | + , − | + | |
Length of patient-provider relationship | + , − | + | |
Other sources of LVS information | + | + | |
Organizational level | Communication between health professionals | − | |
Cooperation between providers | + | ||
Care coordination | − | ||
Low vision optometric services | + | ||
Time constraints ophthalmic practice | − | − | |
Community Level | Fear of stigma | − | |
Distance to LVS/Transportation | − | + , − | |
Education of healthcare providers of LVS | + | ||
Public policy level | Dutch healthcare system | + , − | + |
Regional service provision | + | ||
Long waiting lists | − |
Individual level
Motivation
“It goes pretty fast, people know whether they want it or not. But there is a really large group that doesn't want it (…) I think half of the patients says ‘I'm feeling too good’ or ‘I don't want to’. Maybe even more than half (Ophthalmologist, male, aged 42).”
“I thought it was good, I think every little bit helps, so if [name LVS organization] can help me with this, for example with glasses or something, I think it's great (Male, aged 96, macular degeneration).”
Self-advocacy
“It also depends on the patients ability to self-advocate. (…) Yes, they are more likely to say that they want something or they are more likely to say to the doctor ‘refer me (to LVS)’ or ‘this does not work and that does not work anymore’ (Optometrist LVS, female, aged 39).”
Experienced impact of the VI
“Yeah, watching TV, especially reading the newspaper, what I always do. Sometimes when I was cooking food, I didn’t see it well. Yeah, very simple things actually (Female, aged 72, glaucoma).”
“In the beginning you are quite restless, so I wanted to know what you (LVS) can do for me. That is the reason that I brought it up in a consultation with my ophthalmologist. (…) Yes it makes you a little anxious, ‘What else can I do, can I still help myself’? You feel you are becoming less independent, you have to ask for help (Female, aged 88, macular degeneration).”
Participation needs
“While the one does not have that need and says ‘I am happy that I am still able to see the television and I walk a little bit outside and all that goes well’, someone else may want to drive their car or has to take care of someone and then says ‘I really need to be able to ride my bike’ (Ophthalmologist, male, aged 42).”
“I thought ‘The fact that I will see less won’t bring me down’ (…), so I thought I need to make sure that I can keep reading and talk on the phone with people, internet, e-mail, using the mobile phone with the library on it and the reading function. So basically, to be able to do these activities, to stay active as much as possible (Male, aged 78, macular degeneration).”
Attitude regarding asking for help and seeking healthcare
“A whole generation of people simply has learned to take care of themselves and not to ask for help, while I think the current generation is better able to do that than people who are aged 70 or older (LVS professional, male, aged 56).”
Disease duration
“ (…) Especially with recently diagnosed macular degeneration, people do not really want that yet. Because they are still in the beginning of that treatment and they want to see better again and they still have hope that it will all get better (Ophthalmologist, female, aged 43).”
Lack of awareness and knowledge of LVS
“When you have a consultation with a patient, they remember 25% when leaving and 10% when they are at home. So a lot of (information) is lost. So you shouldn’t be surprised when people don’t remember that you’ve talked about it (LVS) (Ophthalmologist, male, aged 64).”
Acceptance of the VI
“I walked in there once, during a walk-in consultation hour and that was very confronting for me. I was welcomed by a woman who was blind and she showed me around in a room and showed me all the low vision aids they had. (…) Yeah, then you are confronted with the fact ‘I need something, I'm welcomed by a blind woman, so it could get even worse, for me it could also go that way’ (Male, aged 60, macular degeneration and glaucoma).”
“Yeah, those are often the people who had acute vision loss. Because of a trauma or vascular occlusion or something like that and indeed for those people acceptance is often difficult and it takes time. Then I also often talk about LVS and that they can help with that (Ophthalmologist, female, aged 43).”
Other individual factors
Interpersonal level
Information provision LVS
“If the diagnosis is determined, they should give you options. The ophthalmologist could have told me first ‘We will first await the treatment effect and then we will see if we can possibly refer you to the LVS organization’, or something like that. That would have been much better. It would also have given me more peace of mind if someone would have said that (Female, aged 55, macular degeneration).”
“(…) People with wet macular degeneration who receive injections, the distance vision is often good enough and they cannot read anyway, but often we do notice that the reading acuity is bad. That group is also often overlooked and therefore not referred because of their distance vision not being bad enough. (LVS professional, female, aged 45).”
Communication skills/strategies healthcare professionals
“I use my assessment and my communication skills to point that out, (…) a bit of sensing what people can and cannot do and whether they live alone or whether there is help, how the groceries are going, whether they need help with that, things like that (…). Well, reading, how that goes, watching TV, mobility, I think those are the most important three to always ask (Low vision optometrist, female, aged 45).”
“They take the time for you. That is important, the main thing is that you are a person and that people see that. (…) At the LVS that man asked me ‘When you look at me, what parts do you see of my face?’ And I started laughing (…) and I said ‘No one had ever asked me such a specific question’ (Male, aged 60, glaucoma and macular degeneration).”
“(…) I have experience with two doctors. I think both doctors are very capable, with one doctor I talk very easily and he listens and the other ophthalmologist stays focused on the screen and it is much more difficult to have conversations with him. Then it is much more difficult to get it started (Female, aged 88, macular degeneration).”
Social support
“And it also depends on the people that accompany patients. Sometimes there are children who are very active and who want everything to be done (for their parent). But when there is no company, or a neighbor or something like that, then of course the connection is much weaker and then they don’t care what is done. So if the patients’ company is stimulating, then it is of course much better (Ophthalmologist, female, aged 43).”
Length of patient-provider relationship
“Yeah, I've been treated there regularly, so of course, I've known him (rehabilitation physician) for years. To him I dared to say ‘Can't you refer me there?’ (Female, aged 74, macular degeneration).”
Other sources of LVS information
Organizational level
Communication between health professionals
“Then you get feedback about what you can do for the patient and I think if I would get more feedback about the patients I referred (…) then I think that the next referral is a bit more active because I can also include that in the conversation with the next patient who may be in doubt (Ophthalmologist, female, aged 47).”
Cooperation between providers
Care coordination
“That are the people who, if you don’t watch out, are being overlooked and therefore are not referred, because both patient and doctor are busy with saving what can be saved (regarding eyesight) and then sometimes they forget that in the meantime help is also needed at another level. Especially because this group doesn’t often see their own ophthalmologist, as one day this person performs the injection and tomorrow that person, and so on (Ophthalmologist, male, aged 64).”
Low vision optometric service
Time constraints ophthalmic practice
“I also think that we could refer more, but we somehow don't do that, also because of the busy consultation hours (…) (Ophthalmologist, female, aged 43).”
Community level
Fear of stigma
“Then it has a stigmatizing effect and then people say ‘I am not ready for that yet’. I always compare it with my parents who didn’t want to walk with a walker after hip rehabilitation. Then everybody would have seen that they had something. (Ophthalmologist, male, aged 42).”
Distance to LVS/Transportation
Education of healthcare providers of LVS
“Ophthalmologists have relatively little time, so we try to make the ophthalmologists, the optometrists, the technical ophthalmic assistants (…) as aware as possible about our work (LVS professional, female, aged 45).”
Public-policy level
Dutch healthcare system
“I also have a reasonable pension, so we can manage just fine financially. (…) It (care of LVS organization) is still 100% reimbursed. (…) I have visual problems and my own compulsory deductible goes to that (Male, aged 78, macular degeneration).”